That time of year again.....

zx10guy · April 2019

So I just went through the frantic mess that is the blood work/CT scans required for the routine check ups. The complication I have now with doing my CT scans is having to have blood work done first because of the high blood pressure medication I'm on now. So I go into my doc's office yesterday morning to get my blood drawn and check periodically on the patient portal for my results. I get the results early this morning. CEA still elevated and a bit higher at 28.6 from 26 back in October. I scramble to get an appointment to get a CT scan done today. Managed to get an appointment for 11:20. Call back just before 2PM to see if the report is ready. It is. I go to pick it up. All clear.

Depending on what happens with the follow up visit with the doc which I think I'm seeing the PA this time, it'll look as if I'll be moving to 1 year check ups now. And this will mean I'll be 7 years clear from my initial stage 3b diagnosis for colon cancer and 3 years from my second primary of stage 0 appendicial cancer.

So far there is no explanation as to why my CEA numbers have been so far out of whack. My doc says if it was due to cancer, we would have found something by now or I would be very symptomatic. The craziness with my CEA started March of 2017 during a routine check up. My previous CEA number in December was 5.4. In 3 months, it shot up to 15.6. We went through a bunch of different tests to find the cause but nothing was found. So for the 2 years, my CEA has fluctuated from a high of 20 to a low of 11.9. My doc says if cancer is causing this, there wouldn't be such fluctuations. All of the lab work was done at Labcorp. In October when my CEA came in at 26 from a previous of 17.7, my doc's practice joined a larger oncology practice and they do their own lab work in house. So I'm thinking because of the new lab, that this may be my new baseline.

I don't know what else to say at the moment. The first year this CEA journey I was a nervous wreck. As time goes by, I'm less and less bothered by the number. Even when I saw it was the highest it's been for me. Maybe I'll be that weird exception where having a high CEA doesn't mean there is cancer. Maybe what ever is causing the elevations will pop up in a scan down the line. I guess time will tell.

SandiaBuddy · April 2019

Dang

The fun never ends. All the more reason to give the bike a healthy run during this brilliant Spring weather.

Annabelle41415 · April 2019

Bittersweet

Wow this is bittersweet. It just doesn't seem to give you a good answer but it's a good thing that nothing shows up in the CT scans. There are many fluctuations for CEA but none I'm able to think that could go that high but it might just be your normal. Everyone's level's on everything from sugar, kidney, liver, prostrate are their own normals not everyone else's normal. Just take this great CT and run with it and congratulations on 7 years.

Kim

zx10guy · April 2019

SandiaBuddy said:
Dang
The fun never ends. All the more reason to give the bike a healthy run during this brilliant Spring weather.

Yes. It never seems to end

Yes. It never seems to end for me. When I thought I'd be working out details about extending my check up intervals and when my oncologist would cut me loose, I get hit with appendicial cancer in 2016. Then the CEA craziness hits me in 2017. Now this CEA thing has escalated into a whole new level of fun.

I'd love to be out riding more. But the weather has sucked in the Mid Atlantic for the past few weeks. Either it's too cold or windy. Or it's raining. I bought a set of track boots for my upcoming trip to the track to replace my beat to heck old ones. I've been wanting to get out to break them in but can't due to the stupid weather. Also, issues with my divorce and things around visitation with my daughter has also affected my mood. And if that isn't enough, I was going through a job hunt to get out of a terrible work situation and just started a new job.

SandiaBuddy · April 2019

zx10guy said:
Yes. It never seems to end
Yes. It never seems to end for me. When I thought I'd be working out details about extending my check up intervals and when my oncologist would cut me loose, I get hit with appendicial cancer in 2016. Then the CEA craziness hits me in 2017. Now this CEA thing has escalated into a whole new level of fun.

I'd love to be out riding more. But the weather has sucked in the Mid Atlantic for the past few weeks. Either it's too cold or windy. Or it's raining. I bought a set of track boots for my upcoming trip to the track to replace my beat to heck old ones. I've been wanting to get out to break them in but can't due to the stupid weather. Also, issues with my divorce and things around visitation with my daughter has also affected my mood. And if that isn't enough, I was going through a job hunt to get out of a terrible work situation and just started a new job.

Life

Yes, it sounds like life is getting in the way. For me, when I confront issues that once bothered me, I remind myself, "if it isn't cancer, it's not important." Hopefully the weather in your neck of the woods will improve and you can get some opportunity to break in the new boots. Cheers.

zx10guy · April 2019

Annabelle41415 said:
Bittersweet
Wow this is bittersweet. It just doesn't seem to give you a good answer but it's a good thing that nothing shows up in the CT scans. There are many fluctuations for CEA but none I'm able to think that could go that high but it might just be your normal. Everyone's level's on everything from sugar, kidney, liver, prostrate are their own normals not everyone else's normal. Just take this great CT and run with it and congratulations on 7 years.

Kim

Yes, it is bittersweet. As I

Yes, it is bittersweet. As I've said, I've been dealing with this CEA rollercoaster for 2 years now. In the beginning, I won't lie, I was getting testy when I was reading posts from others worrying about their few tenths of an increase in CEA. I wanted to say few tenths? I'll trade you for my few points at a time way above the normal range. But I then calmed down and had to put things in perspective that each person has their situation which defines their own crisis. They have theirs. I have mine. And there are those out there that are stage 4 or recurrent who would trade for my situation as they are going through active treatment. So I do have to realize, I have lots to be grateful for. But as I've said in other posts, it's hard to look at the positive when I have other things which are clouding my emotional state which is my divorce and issues around being able to spend quality time with my daughter.

I don't know if I'll ever be able to put at least this chapter into a back room in my head which doesn't enter into my daily thoughts with this CEA thing going on. I did find a medical article about a women in Taiwan who was tracked for 5 years after be coming Colon Cancer recurrent into the ovaries. Her situation is a more extreme version of mine. After surgery to remove the metastatic tumors, she went into mop up chemo treatment. The chemo treatment was not changing her CEA number and in fact her CEA number sky rocketted up into the 4 figures. CT scans didn't show any cause for the extreme CEA rise. Over time, her CEA would fluctuate up and down between 2 to 3 figures. After tracking her for 5 years with scans and no further chemo, they were never able to find any cancer or cause for the elevated CEA. I'll see if I can find a link to the medical article. I downloaded a copy for myself to refer to occassionally.

The other thing which caused me to wonder what the heck is going on was when I had my last appointment with my doc, he felt the 26 number was an error with the new machine they got in to do the CEA assay test. He didn't order another test which I did find odd. But I didn't question him on this as he's been right about my situation the entire time I've been his patient. He also is the founder of the oncology practice which gives a window into his experience. When I got the 28.6 number, I was thinking WTF? But I was bracing for the other alternative that the number would be higher....much higher. Looking at the variation, the two numbers are really not that far apart and are probably within the window of accepted variability. This may be the reason why I haven't received a phone call from my doctor's office about this. As my doc doesn't feel there is cause for alarm. The scan just confirms things for now. The last checkup when I got the 26 number, his nurse did call me to make sure I was scheduling a CT scan.

But thanks Kim on the congrats.

zx10guy · April 2019

SandiaBuddy said:
Life
Yes, it sounds like life is getting in the way. For me, when I confront issues that once bothered me, I remind myself, "if it isn't cancer, it's not important." Hopefully the weather in your neck of the woods will improve and you can get some opportunity to break in the new boots. Cheers.

Thank you SB for the

Thank you SB for the perspective and understanding. I hope you will be in the position soon to get that dream car to also get some enjoyment out of life.

tanstaafl · April 2019

I am glad nothing has turned

I am glad nothing has turned up, you're really special. Whatever is going on I would think that if enough lab work gets done, and some informed brainpower is applied, that it likely will be an "exception that proves the rule" in oncological biology. In your shoes, I would try to get some additional low cost biological information out of the labs, partly for self defense. One of our big killers, appears to be old standard practices' inability to monitor and react to adverse changes in bloodwork and biology.

I'll give an example. In the literature, a CRC with high CEA and low or 0 CA199 is "not so bad" prognostically (more likely nonrecurrent after surgery and chemo stage 2-3; alive, not likely life of Riley if mCRC); a CRC with high CA199 and low or 0 CSLEX1 or CEA, "not so bad". Ultralow flavors are best. Even an intermediate CEA and CA199, or CSLEX1 and CA199, historically ate everyone's lunch. A large fraction of the stage 3 recurs are with initially elevated CSLEX1 and CA199 tissue markers, highly metastatic. The metastasis was totally stoppable by adding cimetidine to adjuvant metronomic 5FU treatment in a 1990-1992 trial. IIRC, CSLEX1 is one of 5 epitopes (fingers) for the CEA comlplex. Craig had high initial CA199 but low CEA and survived for a long time; when his CEA became elevated, it ate his lunch because his doctors did not react early and usefully to the change(s). My wife was stage 4 and had initially elevated CEA+CSLEX1+CA199 tissues we but used cimetidine, 10+ weeks without 5FU and then with metronomic 5FU, and did well with less damage and no additional metastasic sites. This was a cheap targeted molecular application because we did that first CA199 lab early on.

Cancer related biology can be tracked at several different levels. e.g. classical tumor markers like CEA, CSLEX1, CA199, CA125, AFP; cytokines(expensive); genetics (expensive); and secondary labs like LDH, ALP, inflammation, etc. Addon prices for us for AFP and CA125 were ~$10 each, CA199 $35, CSLEX1 only in Japan. LDH and some other labs might be in your doctor's "Chem25" or higher packages (insured with dr's order?).

First, do you know what version of CEA test that you're getting? One CEA test version counts fewer isoforms than the other and often seems to be a factor of two higher, potentially maybe more.

zx10guy · April 2019

tanstaafl said:
I am glad nothing has turned
I am glad nothing has turned up, you're really special. Whatever is going on I would think that if enough lab work gets done, and some informed brainpower is applied, that it likely will be an "exception that proves the rule" in oncological biology. In your shoes, I would try to get some additional low cost biological information out of the labs, partly for self defense. One of our big killers, appears to be old standard practices' inability to monitor and react to adverse changes in bloodwork and biology.

I'll give an example. In the literature, a CRC with high CEA and low or 0 CA199 is "not so bad" prognostically (more likely nonrecurrent after surgery and chemo stage 2-3; alive, not likely life of Riley if mCRC); a CRC with high CA199 and low or 0 CSLEX1 or CEA, "not so bad". Ultralow flavors are best. Even an intermediate CEA and CA199, or CSLEX1 and CA199, historically ate everyone's lunch. A large fraction of the stage 3 recurs are with initially elevated CSLEX1 and CA199 tissue markers, highly metastatic. The metastasis was totally stoppable by adding cimetidine to adjuvant metronomic 5FU treatment in a 1990-1992 trial. IIRC, CSLEX1 is one of 5 epitopes (fingers) for the CEA comlplex. Craig had high initial CA199 but low CEA and survived for a long time; when his CEA became elevated, it ate his lunch because his doctors did not react early and usefully to the change(s). My wife was stage 4 and had initially elevated CEA+CSLEX1+CA199 tissues we but used cimetidine, 10+ weeks without 5FU and then with metronomic 5FU, and did well with less damage and no additional metastasic sites. This was a cheap targeted molecular application because we did that first CA199 lab early on.

Cancer related biology can be tracked at several different levels. e.g. classical tumor markers like CEA, CSLEX1, CA199, CA125, AFP; cytokines(expensive); genetics (expensive); and secondary labs like LDH, ALP, inflammation, etc. Addon prices for us for AFP and CA125 were ~$10 each, CA199 $35, CSLEX1 only in Japan. LDH and some other labs might be in your doctor's "Chem25" or higher packages (insured with dr's order?).

First, do you know what version of CEA test that you're getting? One CEA test version counts fewer isoforms than the other and often seems to be a factor of two higher, potentially maybe more.

Thanks for the reply.

Thanks for the reply.

When my blood work was being done at Labcorp, they were using the Roche test. The in house lab, I don't know for sure. I suspect it's the Bayer/Siemens based on the reported normal ranges of 0 to 3 for non smokers and up to 5 for smokers.

My doc did run an AFP test for me about a year ago which came back normal.

I'm due to see my GI doc to get my colonoscopy scheduled. I may ask him to order a set of labs through Labcorp to see where my number is. I have a long history with my blood work at Labcorp with a bunch of different data points. It's when my oncologist joined the larger practice which uses the in house lab is when the numbers were really out of whack.

Side note, I've had so many scans done by Community Radiology that I'm starting to recognize the names of doctors who are reading my images. My recent scan had a doctor's name which I distinctly remember seeing before. I went through my previous scan reports and sure enough the same doc had read one of my scans a couple of years ago.

zx10guy · April 2019

Here's a site which has the

Here's a site which has the text of the case I mentioned where the lady had very high CEA levels for years without any cancer found:

https://academic.oup.com/jjco/article/36/12/811/874390

SandiaBuddy · April 2019

zx10guy said:
Thank you SB for the
Thank you SB for the perspective and understanding. I hope you will be in the position soon to get that dream car to also get some enjoyment out of life.

Cars

I love cars, but I love hiking more. I just had a heck of a hike this weekend. I am looking at updating my car this Summer, but it will probably be something conservative as it is looking like I may be around for a while longer. But I think the bottom line is that we should all pursue our passions.

That time of year again.....

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